I watched the Steve Gleason documentary yesterday. I purchased it awhile ago but didn't think the holidays would be a good time for me to watch it. I loved it.
You know how when you are first married and suddenly all the movies of married couples are just funnier. Or when you have your first child and now all the programs of babies seem funnier. It's all just where you are in your life that bring more to the art you are experiencing. Who would have ever thought that a documentary of ALS would make me laugh? It also made me cry but that, I expected. This film is just so very real. There was one part where his wife was in a separate bed from him and he is typing out his disappointment in something she didn't do and it was like I was hearing Mike all over again. To hear her say "ok" without even looking up just spoke volumes to me.
There aren't direct parallels in their relationship and mine with Mike but when it comes to how the ALS affected them, that's when I felt connected.
Living with ALS even as a caregiver is lonely. Very few people really grasp what your lives are like and now I am watching this and thinking...... Wow, it wasn't just us. Of course, with Steve being an NFL football player I assume they had resources that Mike did not since his football was college. Their outings showed a lot of people helping. I would have given anything to just have someone sit next to Mike so I could take a shower some days.
I highly recommend watching this movie, but to tell the truth, it may not mean as much to you as it did to me. Just like all the other examples I gave of why things speak to you, this one might not. But if you are interested in a window view of the life of someone living with ALS, this movie gives you the seat of the house.
Saturday, January 7, 2017
Sunday, January 1, 2017
New Year..... now what?
One thing that was in my face apparent when it came to finding qualified nurses for Mike is that.... there aren't any in homecare. This isn't anything that I have experienced with my girls in a while because of the 4 nurses I had here for them, the longest employed had been 14 years, the most recent was 5 years... and that was my brother. When I got out of nursing school, I had no intention of being Mike's nurse but I went to school to be a paid provider for my girls (allowed in Ohio after 18 years old and if working through an agency). So when one of the 4 nurses became increasingly disinterested in doing more than the bare minimum and consistently showing up late, I was hesitant to fire hire knowing that finding nurses is difficult. Made even more difficult because my girls can't tell someone what they need. Before making the difficult decision to end her employment, I talked with the other nurses to see if they have any intention of changing their schedules. Mostly the one who had been here the longest.... 14 years..... even though she was only working 18 hours a week. The one I was firing was working 20 hours per week. No one indicated any desire to change or reduce hours so the next time the nurse was late without explanation (and this time with eye rolling) I fired her. This meant I was now going to be working 36 hours a week here. When I say working... I am working, it's a job taking care of my girls. They are dependent for all care and nursing skill is required to keep them healthy. Also, when I say I'm working 36 hours a week, I'm not including the nights. Every single night from midnight to 8am I am up multiple times a night to keep them healthy and meet their needs, those times I am not paid for.
I was working out pretty good, I was enjoying providing more direct care for my girls and didn't mind staying home more. I still had M,W, F evening to go out with friends. And then... the nurse who had been here for 14 years who the month before told me she didn't foresee any changes in her schedule QUIT. She gave me notice and it was amicable, but add her 18 hours a week to my 36 hours a week (add another 48 for nightshift) and I am now working much more than I ever intended.
I'm tired. I'm still glad to be providing direct care for my girls, but it takes a lot out of me. My only free evenings now are Monday and Friday. Unless I hire someone else, which scares the shit out of me.
The one I had fired sent me a text asking if she could come back for 12 hours a week. I considered it, afterall, she was trained and she knows what to do even if she sometimes chose not to. I told her I didn't have any openings.
For the past couple of days Taylor has been running a fever. Not too awful high, and responds quickly to the Motrin and she isn't showing me any other symptoms so I'm assuming it's viral. My nursing mind is very rational and usually spot on. The Mom side of me trusts that I know my girls and I'll act appropriately. But there is another side of me now... the side of me who watched Mike die. That part of me freaks out with every sign of illness. Every time their temperature increases and they have that look on their faces telling me that they don't feel good, I relive Mike's death. It's painful. This time, it has been made worse because of the rest of the world celebrating. New Year is a big deal to people. I'm jealous of their carefree partying and their hugging and resolving to do things different starting "tomorrow". I'm jealous, but then I'm grateful. I'm grateful that we aren't in the ICU. I'm grateful that all of our needs are met.
Today, I'm tempted to rehire the nurse. I feel like I am still healing sometime from watching Mike die and it is going to take some more time to gain some coping skills. And then the next second, I don't want to give up their care to anyone else. I want them to have the hands on care from the one person on the planet who loves them the most....me.
So..... Happy New Year! Let's all hope for the best.
I was working out pretty good, I was enjoying providing more direct care for my girls and didn't mind staying home more. I still had M,W, F evening to go out with friends. And then... the nurse who had been here for 14 years who the month before told me she didn't foresee any changes in her schedule QUIT. She gave me notice and it was amicable, but add her 18 hours a week to my 36 hours a week (add another 48 for nightshift) and I am now working much more than I ever intended.
I'm tired. I'm still glad to be providing direct care for my girls, but it takes a lot out of me. My only free evenings now are Monday and Friday. Unless I hire someone else, which scares the shit out of me.
The one I had fired sent me a text asking if she could come back for 12 hours a week. I considered it, afterall, she was trained and she knows what to do even if she sometimes chose not to. I told her I didn't have any openings.
For the past couple of days Taylor has been running a fever. Not too awful high, and responds quickly to the Motrin and she isn't showing me any other symptoms so I'm assuming it's viral. My nursing mind is very rational and usually spot on. The Mom side of me trusts that I know my girls and I'll act appropriately. But there is another side of me now... the side of me who watched Mike die. That part of me freaks out with every sign of illness. Every time their temperature increases and they have that look on their faces telling me that they don't feel good, I relive Mike's death. It's painful. This time, it has been made worse because of the rest of the world celebrating. New Year is a big deal to people. I'm jealous of their carefree partying and their hugging and resolving to do things different starting "tomorrow". I'm jealous, but then I'm grateful. I'm grateful that we aren't in the ICU. I'm grateful that all of our needs are met.
Today, I'm tempted to rehire the nurse. I feel like I am still healing sometime from watching Mike die and it is going to take some more time to gain some coping skills. And then the next second, I don't want to give up their care to anyone else. I want them to have the hands on care from the one person on the planet who loves them the most....me.
So..... Happy New Year! Let's all hope for the best.
Monday, November 21, 2016
My first Harvard football game.... well, a lot of firsts
A few months back when I was put in contact with Bob from the Harvard Varsity Club he said "hey, if you ever want to go to a Harvard game let me know". I wanted to go to the Harvard vs Yale game since that is the game I heard about from Mike's friends on how Mike sacked the quarterback for the win back in .... probably 1990. I almost picked a different game to go to since I was afraid of traveling with the possibility of snow but a friend, Bill, called me a chicken, so I booked my flight. I was able to get the nursing all arranged and my flight and hotel booked and luckily there wasn't any snow anywhere!
My girls were healthy but in true Taylor fashion she was close to having a seizure the day before I was to leave. Fortunately, she didn't have one and I was able to get a little bit of sleep.
I had a friend available to drop me off at the airport. Even though I don't travel by plane often, I am somewhat familiar with what is now called the John Glenn airport here in Columbus, Ohio.
On the first flight over to Boston I was sitting next to a young man who was probably in high school, we exchanged greetings and he pointed to his mother across the isle. I offered to switch seats but she didn't take me up on that (maybe she didn't like the aisle). Once we were up in the air, I was all settled to read my kindle when I looked over at him retrieving his paperback book from his pack. I smiled at seeing someone his age with an actual book. I smiled even bigger when I saw what book he was reading..... you might remember me mentioning this book before..... he was reading one of Mike's favorite books! The same book he bought for me for my birthday, the same book that he told me was on a short list for books he has read multiple times, the same book I was reading to him the last week before he died (I was trying to keep something familiar around him since I figured there was significant brain damage having been 30 minutes without much oxygen)... the book was Watership Down. I told the kid that that book was my boyfriends favorite book and that I had just read it myself about a year ago. He smiled broadly and said that his dad gave it to him to read. He then told me where he was in the book and what his favorite part so far was...... he gave this all voluntarily, I hadn't asked him. It was a lovely way to start my adventure.
Once at the hotel in Boston I foolishly ignored the advice of the information desk and decided to walk to the Hilton. It was foolish because it was about 1.5 miles in a very confusing trek through multiple terminals. I was confused and hungry and in need of a restroom by the time I finally made it to the hotel. Luckily I had checked in through the app and had the digital key all ready to go.
I wasn't there long before I needed to find my way to the Harvard campus and try to meet up with Bob or at least the will call before the hockey game started. The valet at the hotel recommended the subway (which they call the "T"), he circled the stops that I would need to make it to Harvard Square. The hotel shuttled me over to where I would pick up the subway and from there I just started reading signs. I had NEVER taken a subway or bus anywhere since middle school school bus. I bought my Charlie Card, I found the first train.... I found the second train.... I found the third train (on my second try) (I didn't know that you needed to know the final destination of that train in order to get on the right one). I got off the last train at the Harvard stop and looked around for an exit. I found it by just walking forward.... nothing more than luck. Now I'm standing in Harvard Square but I still don't know where the hockey stadium was. Google maps didn't help.... it kept saying "head east towards JFK street".... which was not at all helpful since it was dark so I didn't know east from west and I didn't know where JFK was. I found someone willing to help me even though they didn't know either. They at least knew that the athletic complex was "over the river" so they walked with me to the bridge. Ok..... now I'm closer. I see an archway that says Gate 1 and figured I'd start there. There really isn't too many people around so finding someone to ask wasn't going to work so I just kept walking since I couldn't think of a better idea. Remember it gets dark early so I am walking in a parking lot towards building with no lights and no people. I found a building that said Dillon Field House and that sounded familiar so I went up the steps and there...... there was Bob. I pulled up his facebook page to make sure it looked enough like him to approach with a "Bob?". What are my chances of finding the one man that I needed to find without any address, any communication, any directions and having traveled a good distance. Crazy.
He had my tickets to the hockey game and to the football game for me at will call so I walked that direction. I was about an hour early for the hockey game and that area for some reason just sucked the life out of my phone battery. If I lost my phone, I lost everything. I found an outlet next to the door to the ladies restroom. I spent the next hour tethered to the wall outlet and opening the bathroom door to ladies.
The hockey game was a good game. The pace of the college level game was easier for me than the pro teams, that was helpful. So now comes the challenge of getting back to the hotel. I asked the people working there how to get an uber and they didn't know. I asked a security guard how to get an uber and he didn't know. I am losing battery on my phone now and I've wandered around for about an hour in the dark, cold, hungry, low battery, clueless.... having talked to the uber driver only to have him cancel my ride because he said he couldn't get to the hockey stadium... and I was telling him that I couldn't find a road and that I didn't know where I was. I was running out of options. I called a friend to hear a familiar voice because the isolation was kicking in. He cares, so his end of the conversation were all solution statements, all of which I had already tried, so I just hung up because I was just getting more frustrated. Finally I found a young guy and asked "hey, where do you pick up an uber?".... and as simple as can be he says "up here, it's where I'm going". Ahhhhhhh.... finally I had a little help. When I got to where he was continuing and I was staying he said that it should only take them about 15 minutes and that he could stay with me if I wanted. I thanked him for his help, sent him on his way and waited on the uber.
This was my first time using the uber app and even thought I managed the app and the request, there was still the issue of recognizing the car..... I only really know car, van, truck... and then colors. LOL They gave the plate number but they don't know what you look like so it isn't like they pull right up to you close enough to read the plate number so reading the plates in the dark and drizzling rain was a challenge.
On to the next day... the day of the tailgating and the game, I took an uber to the game but there was so much traffic that the uber driver suggested I go ahead and get out so I'm not paying to sit in traffic (that was kind of him). I am now walking the same path I did the night before but this time during the day and I was part of a hourd of people going the same place. I found the tailgating but there were probably 6 different sections and multiple tents in each one and even though I knew of 2 people who were going to be there, I didn't know where "there" was. I figured the older the alumni, the closer to the stadium, so I started walking toward the stadium. And just guess who I saw right away.... Bob... the guy that I needed to see the night before. He offered to take me around and introduce me to people but being in his position he was easily distracted and had wandered off without me. It was then when I saw another familiar face, Bill, with his kids. I walked with them for awhile and found the 90s tent. I stayed there and just wandered around with a jack and coke while he and his family went exploring. It wasn't too much longer when another familiar face showed up, John, with his family. I followed them into the stadium so I would have a better idea of where my seat was.
This is where I might be sound like I am stepping on some toes here and I don't mean to be, but again, this is my blog where I can write what I experience through my eyes.
Before going on this trip I had a few people lined up to go with me or meet me there and I had people available to join me for dinner or drinks here and there and for whatever reasons.... none of that happened. I am used to being alone and I usually prefer being alone, but this time..... this time it left me feeling very vulnerable and in a heightened state of confusion the entire time.
Bob had told me the day before the game that they were surprising someone with another grant from Mike's Fund and they would let them know the next day (being game day). I had wanted to meet the family in person after having exchanged emails with the wife of the recipient but it never happened.
The first time I saw them was when they were taken out to the field by Bob and a camera to be awarded the grant.
Try to put yourself in my mind for just a second, after all.... you've made it this far...... I am sitting in the stands of where I would have been to watch the love of my life play football during his healthy days and without any warning I look up and see on the big board his name.
I see the family going out to the field, I hear a voice talking about my Mike..... the man I loved and cared for for over 4 years without much help at all..... his name was right there and another man with the same diagnosis was on the field (with his wife and children) receiving money raised and awarded with Mike's name as the Fund. I felt instantly like I did when I read on Facebook of when Mike's funeral was to be held. I felt stripped of any association to the man I loved and cared for when no one else would. I dedicated my life to caring for him along with my kids because of the love that I had for him and the life that he deserved wasn't the one he was forced to live.
Can any of you imagine what that feels like? Your wife, husband.... whatever.... and you are in the stands caught unaware.....
Not only had I spent the last couple of days alone and lonely and lost.... it now culminated to sitting in the stands as a bystander to the memory of Mike's life. And ended with me taking the subway back to the hotel in tears with all kinds of emotions racing through my head. It's a wonder I made it back.
I know none of this changes who I know I was to Mike and who he was to me, but it felt very disrespectful. Would it have been different if we had been married.... probably? Can anyone marry someone when they need services from the State.... not easily... you are no longer eligible for the services you need. Would Mike's mother have been treated that way if she were still alive... nope.
I was so glad to be home. So grateful for my friend to not just pick me up at the airport but come in to the terminal and greet me with a hug, and get my bags for me, and open my door for me, and get me coffee, and carry my stuff back into the house.... I was just sooooooo grateful for not having to think anymore. Not having to be alone even for just a short ride home. And to find my girls healthy and happy and with huge smiles on their faces to greet me.
My girls were healthy but in true Taylor fashion she was close to having a seizure the day before I was to leave. Fortunately, she didn't have one and I was able to get a little bit of sleep.
I had a friend available to drop me off at the airport. Even though I don't travel by plane often, I am somewhat familiar with what is now called the John Glenn airport here in Columbus, Ohio.
On the first flight over to Boston I was sitting next to a young man who was probably in high school, we exchanged greetings and he pointed to his mother across the isle. I offered to switch seats but she didn't take me up on that (maybe she didn't like the aisle). Once we were up in the air, I was all settled to read my kindle when I looked over at him retrieving his paperback book from his pack. I smiled at seeing someone his age with an actual book. I smiled even bigger when I saw what book he was reading..... you might remember me mentioning this book before..... he was reading one of Mike's favorite books! The same book he bought for me for my birthday, the same book that he told me was on a short list for books he has read multiple times, the same book I was reading to him the last week before he died (I was trying to keep something familiar around him since I figured there was significant brain damage having been 30 minutes without much oxygen)... the book was Watership Down. I told the kid that that book was my boyfriends favorite book and that I had just read it myself about a year ago. He smiled broadly and said that his dad gave it to him to read. He then told me where he was in the book and what his favorite part so far was...... he gave this all voluntarily, I hadn't asked him. It was a lovely way to start my adventure.
Once at the hotel in Boston I foolishly ignored the advice of the information desk and decided to walk to the Hilton. It was foolish because it was about 1.5 miles in a very confusing trek through multiple terminals. I was confused and hungry and in need of a restroom by the time I finally made it to the hotel. Luckily I had checked in through the app and had the digital key all ready to go.
I wasn't there long before I needed to find my way to the Harvard campus and try to meet up with Bob or at least the will call before the hockey game started. The valet at the hotel recommended the subway (which they call the "T"), he circled the stops that I would need to make it to Harvard Square. The hotel shuttled me over to where I would pick up the subway and from there I just started reading signs. I had NEVER taken a subway or bus anywhere since middle school school bus. I bought my Charlie Card, I found the first train.... I found the second train.... I found the third train (on my second try) (I didn't know that you needed to know the final destination of that train in order to get on the right one). I got off the last train at the Harvard stop and looked around for an exit. I found it by just walking forward.... nothing more than luck. Now I'm standing in Harvard Square but I still don't know where the hockey stadium was. Google maps didn't help.... it kept saying "head east towards JFK street".... which was not at all helpful since it was dark so I didn't know east from west and I didn't know where JFK was. I found someone willing to help me even though they didn't know either. They at least knew that the athletic complex was "over the river" so they walked with me to the bridge. Ok..... now I'm closer. I see an archway that says Gate 1 and figured I'd start there. There really isn't too many people around so finding someone to ask wasn't going to work so I just kept walking since I couldn't think of a better idea. Remember it gets dark early so I am walking in a parking lot towards building with no lights and no people. I found a building that said Dillon Field House and that sounded familiar so I went up the steps and there...... there was Bob. I pulled up his facebook page to make sure it looked enough like him to approach with a "Bob?". What are my chances of finding the one man that I needed to find without any address, any communication, any directions and having traveled a good distance. Crazy.
He had my tickets to the hockey game and to the football game for me at will call so I walked that direction. I was about an hour early for the hockey game and that area for some reason just sucked the life out of my phone battery. If I lost my phone, I lost everything. I found an outlet next to the door to the ladies restroom. I spent the next hour tethered to the wall outlet and opening the bathroom door to ladies.
The hockey game was a good game. The pace of the college level game was easier for me than the pro teams, that was helpful. So now comes the challenge of getting back to the hotel. I asked the people working there how to get an uber and they didn't know. I asked a security guard how to get an uber and he didn't know. I am losing battery on my phone now and I've wandered around for about an hour in the dark, cold, hungry, low battery, clueless.... having talked to the uber driver only to have him cancel my ride because he said he couldn't get to the hockey stadium... and I was telling him that I couldn't find a road and that I didn't know where I was. I was running out of options. I called a friend to hear a familiar voice because the isolation was kicking in. He cares, so his end of the conversation were all solution statements, all of which I had already tried, so I just hung up because I was just getting more frustrated. Finally I found a young guy and asked "hey, where do you pick up an uber?".... and as simple as can be he says "up here, it's where I'm going". Ahhhhhhh.... finally I had a little help. When I got to where he was continuing and I was staying he said that it should only take them about 15 minutes and that he could stay with me if I wanted. I thanked him for his help, sent him on his way and waited on the uber.
This was my first time using the uber app and even thought I managed the app and the request, there was still the issue of recognizing the car..... I only really know car, van, truck... and then colors. LOL They gave the plate number but they don't know what you look like so it isn't like they pull right up to you close enough to read the plate number so reading the plates in the dark and drizzling rain was a challenge.
On to the next day... the day of the tailgating and the game, I took an uber to the game but there was so much traffic that the uber driver suggested I go ahead and get out so I'm not paying to sit in traffic (that was kind of him). I am now walking the same path I did the night before but this time during the day and I was part of a hourd of people going the same place. I found the tailgating but there were probably 6 different sections and multiple tents in each one and even though I knew of 2 people who were going to be there, I didn't know where "there" was. I figured the older the alumni, the closer to the stadium, so I started walking toward the stadium. And just guess who I saw right away.... Bob... the guy that I needed to see the night before. He offered to take me around and introduce me to people but being in his position he was easily distracted and had wandered off without me. It was then when I saw another familiar face, Bill, with his kids. I walked with them for awhile and found the 90s tent. I stayed there and just wandered around with a jack and coke while he and his family went exploring. It wasn't too much longer when another familiar face showed up, John, with his family. I followed them into the stadium so I would have a better idea of where my seat was.
This is where I might be sound like I am stepping on some toes here and I don't mean to be, but again, this is my blog where I can write what I experience through my eyes.
Before going on this trip I had a few people lined up to go with me or meet me there and I had people available to join me for dinner or drinks here and there and for whatever reasons.... none of that happened. I am used to being alone and I usually prefer being alone, but this time..... this time it left me feeling very vulnerable and in a heightened state of confusion the entire time.
Bob had told me the day before the game that they were surprising someone with another grant from Mike's Fund and they would let them know the next day (being game day). I had wanted to meet the family in person after having exchanged emails with the wife of the recipient but it never happened.
The first time I saw them was when they were taken out to the field by Bob and a camera to be awarded the grant.
Try to put yourself in my mind for just a second, after all.... you've made it this far...... I am sitting in the stands of where I would have been to watch the love of my life play football during his healthy days and without any warning I look up and see on the big board his name.
I see the family going out to the field, I hear a voice talking about my Mike..... the man I loved and cared for for over 4 years without much help at all..... his name was right there and another man with the same diagnosis was on the field (with his wife and children) receiving money raised and awarded with Mike's name as the Fund. I felt instantly like I did when I read on Facebook of when Mike's funeral was to be held. I felt stripped of any association to the man I loved and cared for when no one else would. I dedicated my life to caring for him along with my kids because of the love that I had for him and the life that he deserved wasn't the one he was forced to live.
Can any of you imagine what that feels like? Your wife, husband.... whatever.... and you are in the stands caught unaware.....
Not only had I spent the last couple of days alone and lonely and lost.... it now culminated to sitting in the stands as a bystander to the memory of Mike's life. And ended with me taking the subway back to the hotel in tears with all kinds of emotions racing through my head. It's a wonder I made it back.
I know none of this changes who I know I was to Mike and who he was to me, but it felt very disrespectful. Would it have been different if we had been married.... probably? Can anyone marry someone when they need services from the State.... not easily... you are no longer eligible for the services you need. Would Mike's mother have been treated that way if she were still alive... nope.
I was so glad to be home. So grateful for my friend to not just pick me up at the airport but come in to the terminal and greet me with a hug, and get my bags for me, and open my door for me, and get me coffee, and carry my stuff back into the house.... I was just sooooooo grateful for not having to think anymore. Not having to be alone even for just a short ride home. And to find my girls healthy and happy and with huge smiles on their faces to greet me.
Saturday, October 15, 2016
October 7 .... move in day
After waiting an entire year (or maybe more) from the time we applied for home services to the day he moved in...... the day was October 7th. I remember when the case worker came in to the nursing home and said that everything was in place and all we had to do was pick a day. We didn't answer her right away because we both knew that being anxious to have him move in and the reality of getting all the vendors in place, were things to consider. I had already been in contact with the vendors that I use for my girls so that the nursing home just needed to order the supplies (they require physician orders initially). The only thing we were really working on was the ventilator itself. The company I use for Taylor wasn't accepting new patients for ventilators so we needed to find a different one. The social worker at the nursing home had a contact and I let her get it all set up. Just .... maybe 2 days.... before he was to move in I asked for the respiratory therapist to come in and go over the transition. Because the State was paying Mike's medical expenses they weren't too keen on paying for 2 ventilators but he couldn't go home with the one from the nursing home and he also couldn't go home without one. It's still rare enough for people to be living in the home setting with a ventilator that the State regulations haven't caught up with changing their rules to allow for things like this. The vendor came in and when I asked what ventilator he had available he gave me the make and model of a ventilator that I didn't recognize. I pulled it up on my phone and when I saw what he planned on giving him I knew that they were just pulling out an archaic model from the back of storage to make the most money. I refused the ventilator even at the risk of delaying his move in day. These things are important. Part of what I wanted to accomplish was to get the same make and model that I was already familiar with, being Taylor's ventilator. With all the stress of transitioning his care over to entirely me, I didn't want to relearn another vent. And I didn't feel comfortable using the company that the nursing home found because of what they offered and also their answers to other crucial questions like response time to troubleshoot events. I called around and found a company that was able to meet all our needs and had one in stock (another problem commonly found). This new company was great, the respiratory therapist was someone who really cared about Mike's needs and respected my comfort level with the vent I knew the best.
We didn't lose any days with changing this all around, thank goodness, it was just a little added stress. Move in day was such a whirlwind. Mike was so over the moon happy, as was I, and it all happened without a hitch. I had already packed up all his belongings (my brother helped me with that) and painted his room to the new colors he chose, and set up all the supplies we would need immediately so all that was left was Mike. Mike had already gone over with me what his needs were likely to be while being placed on the gurney and while traveling since he wouldn't have a way to communicate besides me reading his lips. Not just the anxiety that he had with being moved around like that but also the pain. Mike was a big guy and didn't always fit on the length of a gurney. Because most paralyzed people are without feeling, most medical support people are not mindful of not hurting him. I had to be diligent about where his arm, hands, legs, feet and head were at all times and to sometimes interrupt what was going on to fix what I knew would hurt him. Every bump they hit, every corner they turned required a quick visual assessment and adjustment. Also, his butt was not in good shape. What I mean is the skin was not intact due to the care given to him at the nursing home. He had 2 pressure sores when he came home and some other volatile areas that needed tended to for healing. Having the broken skin on his butt made the transportation events even more painful. We had already talked to the nursing home physician about loading him up with as much anxiety and pain meds that he could safely have (that amount is higher with the risk of respiratory suppression not being an issue with the ventilator) but it meant that I would need to be more aware of him since he wouldn't be as aware of himself.
As soon as we got him moved over into his new bed in our house, I took a picture of him. I wanted to capture that moment. I am so glad that I did even though he didn't like pictures of himself (at first). I don't need the pictures to bring up his face yet, but one day I might. He was so excited he couldn't sleep. Even with all those drugs in his system he was so alert and so happy. I brought the girls into his room to see him. They had already met when I brought the girls to the nursing home to visit with him. We all hung out together in his room while I made last minute adjustments to rearranging supplies and to meeting his needs.
We had a nurse scheduled for later that day so there wasn't much rest for me anytime soon. There was so much more than just medical needs with Mike that my input was required a lot of the time. So even with a nurse, I was never really off duty. The nurses I have for my girls have been with us for 8-14 years, I'm still on call but rarely needed when they are scheduled. That wasn't the case with Mike. If I was in the house I could hear everything in his room. I tried to keep my distance with new nurses for just a bit so that they could develop a relationship of communication and trust, but inevitably I would hear Mike's computer saying "get Ann". That was 24/7. It was hard to not lose my patience with the nurses, as Mike already had before telling them to get me. I walked in on the most ridiculous of situations. Knowing him as well as I did, he rarely had to tell me what was going on, I could assess it quickly. Most of the time I did what was needed to be done and spoke to the nurse as I was doing it so that they could learn a new skill. It wasn't received that way. They usually just sat back down and got back on their phone while I tended to his needs.
But watching his face while he was sleeping and seeing the difference in him from how I knew him in the nursing home made it all worth it. He knew he was finally safe and loved and cared for. I knew that he was finally able to live without fear. ALS is a bitch, living in a constant state of fear due to your environment makes it a thousand times harder...... that was all gone.
So this month is another memory for me to experience without him. But just like moving in with me was a step up for him in care, I try to think of him in death as an improvement from the pain he was in while here. That helps.
We didn't lose any days with changing this all around, thank goodness, it was just a little added stress. Move in day was such a whirlwind. Mike was so over the moon happy, as was I, and it all happened without a hitch. I had already packed up all his belongings (my brother helped me with that) and painted his room to the new colors he chose, and set up all the supplies we would need immediately so all that was left was Mike. Mike had already gone over with me what his needs were likely to be while being placed on the gurney and while traveling since he wouldn't have a way to communicate besides me reading his lips. Not just the anxiety that he had with being moved around like that but also the pain. Mike was a big guy and didn't always fit on the length of a gurney. Because most paralyzed people are without feeling, most medical support people are not mindful of not hurting him. I had to be diligent about where his arm, hands, legs, feet and head were at all times and to sometimes interrupt what was going on to fix what I knew would hurt him. Every bump they hit, every corner they turned required a quick visual assessment and adjustment. Also, his butt was not in good shape. What I mean is the skin was not intact due to the care given to him at the nursing home. He had 2 pressure sores when he came home and some other volatile areas that needed tended to for healing. Having the broken skin on his butt made the transportation events even more painful. We had already talked to the nursing home physician about loading him up with as much anxiety and pain meds that he could safely have (that amount is higher with the risk of respiratory suppression not being an issue with the ventilator) but it meant that I would need to be more aware of him since he wouldn't be as aware of himself.
As soon as we got him moved over into his new bed in our house, I took a picture of him. I wanted to capture that moment. I am so glad that I did even though he didn't like pictures of himself (at first). I don't need the pictures to bring up his face yet, but one day I might. He was so excited he couldn't sleep. Even with all those drugs in his system he was so alert and so happy. I brought the girls into his room to see him. They had already met when I brought the girls to the nursing home to visit with him. We all hung out together in his room while I made last minute adjustments to rearranging supplies and to meeting his needs.
We had a nurse scheduled for later that day so there wasn't much rest for me anytime soon. There was so much more than just medical needs with Mike that my input was required a lot of the time. So even with a nurse, I was never really off duty. The nurses I have for my girls have been with us for 8-14 years, I'm still on call but rarely needed when they are scheduled. That wasn't the case with Mike. If I was in the house I could hear everything in his room. I tried to keep my distance with new nurses for just a bit so that they could develop a relationship of communication and trust, but inevitably I would hear Mike's computer saying "get Ann". That was 24/7. It was hard to not lose my patience with the nurses, as Mike already had before telling them to get me. I walked in on the most ridiculous of situations. Knowing him as well as I did, he rarely had to tell me what was going on, I could assess it quickly. Most of the time I did what was needed to be done and spoke to the nurse as I was doing it so that they could learn a new skill. It wasn't received that way. They usually just sat back down and got back on their phone while I tended to his needs.
But watching his face while he was sleeping and seeing the difference in him from how I knew him in the nursing home made it all worth it. He knew he was finally safe and loved and cared for. I knew that he was finally able to live without fear. ALS is a bitch, living in a constant state of fear due to your environment makes it a thousand times harder...... that was all gone.
So this month is another memory for me to experience without him. But just like moving in with me was a step up for him in care, I try to think of him in death as an improvement from the pain he was in while here. That helps.
Friday, September 16, 2016
Lessons still creep in
When caring for Mike became my sole responsibility there was a lot to learn still. We had spent over 2 years together while he still lived in the nursing home where he received care from them with their protocols. Once he lived here we were able to establish new protocols that were specific to his care. Turns out, some of those things specific to him are now helping me with Taylor.
I have an intuitive nature that helped me figure out how to help him in emergencies that we both were always grateful for. He could always tell what was going on with his body, which is unlike most paralyzed people due to ALS unique nature of letting you know exactly the hell you are now living in. Mike was such a huge supporter for me but more so when he moved in with me. As one family unit, he wanted to contribute to not just me, but my girls. When I would tell him what was worrying me about them (mostly Taylor) he would first and foremost ask if I had time to pray with him, if not, he did it without me. He would message me when he was done. My prayers were always quick little thoughts both good and bad and would be throughout the day. Mike's prayers were these long meditative sessions. I often didn't have time to pray with him but sometimes I would say... yes, but I'll need to duck out of this if I can tell I'm needed. He would message me when he was done and I would pop in and say "Amen".... he would enjoy that ending.... me too.
Some of the things that I started doing with him to help keep his airway clear worked great, some not so great. I could usually tell on my own what the outcome was, whether it had the desired outcome. But Mike could tell me how it FELT. That was a huge help for me when caring for Taylor. When Mike realized how much his input could help me help Taylor he started thinking more about what things could be similar between the two of them and how maybe he could help be a voice for her.
Both of my girls have been sick this month. Not quite hospital sick, but that is a small difference sometimes. One night I had been working with Taylor for about 3 hours (2am to 5am) trying to keep her airway clear and oxygen levels in the 90s. At 5am when I took a step back and tried to get myself out of reaction mode and into thinking mode, one word popped into my head....... cuff. I often get these little one word insights at just the right moment, so often that I no longer question them, I just do them. I knew what was now needed, I deflated her cuff and the change in pressure made her cough really big. Once she made her secretions mobile, I could get a LOT more out of her. Her oxygen numbers popped up to 98%!! That was a huge relief and a huge difference.
Once I sat down and started thinking about the past 3 hours it dawned on me why "cuff" came in my head. That was a trick Mike and I came up with together. When we used that method in a hospital setting, I would often get myself yelled at, but it worked. Mike knew that when we decided to do those things the consequences initially were on me but if we didn't say our sorries and show remorse, things got worse. That is always an issue with patients with chronic conditions. Mike knew what he needed but they would never do it, they wouldn't even put air in his cuff when you could hear it leaking...... crazy rules sometimes take away from actual patient care.
Once I knew that my intervention was actually Mike's intervention for her, I could breath better. He's still helping me.
Remember the songs that will randomly play that I associate with Mike...... well sitting in Chipotle the next day one of those songs played. Picture it..... Chipotle.... what kind of music do you hear while sitting in a Chipotle.... now imagine this song coming on...... Dance Me to the End of Love......
Such a good feeling.
I have an intuitive nature that helped me figure out how to help him in emergencies that we both were always grateful for. He could always tell what was going on with his body, which is unlike most paralyzed people due to ALS unique nature of letting you know exactly the hell you are now living in. Mike was such a huge supporter for me but more so when he moved in with me. As one family unit, he wanted to contribute to not just me, but my girls. When I would tell him what was worrying me about them (mostly Taylor) he would first and foremost ask if I had time to pray with him, if not, he did it without me. He would message me when he was done. My prayers were always quick little thoughts both good and bad and would be throughout the day. Mike's prayers were these long meditative sessions. I often didn't have time to pray with him but sometimes I would say... yes, but I'll need to duck out of this if I can tell I'm needed. He would message me when he was done and I would pop in and say "Amen".... he would enjoy that ending.... me too.
Some of the things that I started doing with him to help keep his airway clear worked great, some not so great. I could usually tell on my own what the outcome was, whether it had the desired outcome. But Mike could tell me how it FELT. That was a huge help for me when caring for Taylor. When Mike realized how much his input could help me help Taylor he started thinking more about what things could be similar between the two of them and how maybe he could help be a voice for her.
Both of my girls have been sick this month. Not quite hospital sick, but that is a small difference sometimes. One night I had been working with Taylor for about 3 hours (2am to 5am) trying to keep her airway clear and oxygen levels in the 90s. At 5am when I took a step back and tried to get myself out of reaction mode and into thinking mode, one word popped into my head....... cuff. I often get these little one word insights at just the right moment, so often that I no longer question them, I just do them. I knew what was now needed, I deflated her cuff and the change in pressure made her cough really big. Once she made her secretions mobile, I could get a LOT more out of her. Her oxygen numbers popped up to 98%!! That was a huge relief and a huge difference.
Once I sat down and started thinking about the past 3 hours it dawned on me why "cuff" came in my head. That was a trick Mike and I came up with together. When we used that method in a hospital setting, I would often get myself yelled at, but it worked. Mike knew that when we decided to do those things the consequences initially were on me but if we didn't say our sorries and show remorse, things got worse. That is always an issue with patients with chronic conditions. Mike knew what he needed but they would never do it, they wouldn't even put air in his cuff when you could hear it leaking...... crazy rules sometimes take away from actual patient care.
Once I knew that my intervention was actually Mike's intervention for her, I could breath better. He's still helping me.
Remember the songs that will randomly play that I associate with Mike...... well sitting in Chipotle the next day one of those songs played. Picture it..... Chipotle.... what kind of music do you hear while sitting in a Chipotle.... now imagine this song coming on...... Dance Me to the End of Love......
Such a good feeling.
Sunday, August 28, 2016
One Year
Well here it is, one year. He was pronounced dead by the physician on the 29th which is today, but it was on a Sunday, like yesterday. So all day Sunday I kept remembering things like deciding to go home to be with my girls for awhile. Like seeing Father Dean's number show up on my phone. He had never called me before. I was afraid he was calling to tell me that Mike had passed away, but he was calling to tell me I still had a chance to keep my promise to Mike but it would need to be soon. I remember waiting for a nurse to come to the house so I can leave. Trying to make it up to the hospital before he died. Walking in to his hospital room where I had spent the past week watching his body just slowly decay only to find him under a warming blanket and looking almost normal (the had the blanket covering him except his face). But also seeing who all was in the room. There was Barb, of course, having been named as family representative. There was Steve and his girlfriend, I was so angry with Steve for not having called me himself. And then the woman and her child who I had never laid eyes on before in 5 years. I still don't know who she is.
I went straight up to his bed and moved the blanket aside and put my gloved hand under his. He loved holding my hand that way. He said people were always touching him but I was the only one to put my hand under his so he could touch me. I could hear them all talking in the room... the nervous laughter.... the "this is how Mike would have wanted it"..... bullshit.... it was all bullshit. I wanted to just throat punch her to restore the quiet. I knew how much Mike had come to despise her for writing that horrible letter to him telling him he was going to "take the guilt of not having a good relationship with his mother before she died, to his grave". That was the last straw for Mike. And you all probably know him, you know.... it takes a lot for him to write people off.... he wrote her off. And here she is. Steve walked to the other side of Mike's bed looking at me after most everyone had went outside to smoke. I pleaded with him with my eyes more than words, asking him to take her out of the room. I had tears streaking my face looking at him just saying "please" and he only said that he couldn't. So I blocked them all out. I blocked out everything except Mike. I could tell by the monitor that his heart was almost done. I heard the nurse ask the respiratory therapist about shutting down his ventilator. I heard the respiratory therapist say that she can't until the physician pronounces him dead. I heard the nurse then tell the rest of them that the doctor would be in to talk to them soon. Barb, in her perpetual state of cluelessness took it upon herself to repeat what the nurse had said to them, to me. Again... the urge to throat punch was almost too much to ignore. But I refocused myself on Mike.
I know I wrote this somewhere but I don't know if it was in these blogs. Mike's fear of dying alone was a big one with living in the nursing home. We had a morbid sense of humor about things sometimes. I told him that I promise I will hold your hand until your last breathe. He grinned and said "you missed that one". We laughed and I tried again "I will hold your hand until your heart no longer beats". So standing there for the hour blocking them out and replaying that promise in my mind..... I laughed. How inappropriate is that?? It was just so absurd.... the circumstances surrounding him as I kept my promise...... I know he was already gone long before his heart stopped so I was picturing him having a bird's eye view on the whole scene. He would have laughed with me.
Mary "little old lady Mary" had called and asked if I would take her to the cemetery for his one year death anniversary. Of course, I am glad to be spending time with her and remembering Mike together this way. But I am becoming more and more certain that he really is around me all the time. Part of me wanted to think that way because there is a huge amount of comfort in that thought. The logic side of me says of course you want to think that way... there is a huge amount of comfort in your theory. I've finally managed to silence the "logic" side of me. He is still with me. He will always be with me. Going to the cemetery just isn't what I need to do anymore, but I'll be there with Mary in about 9 hours.
I went straight up to his bed and moved the blanket aside and put my gloved hand under his. He loved holding my hand that way. He said people were always touching him but I was the only one to put my hand under his so he could touch me. I could hear them all talking in the room... the nervous laughter.... the "this is how Mike would have wanted it"..... bullshit.... it was all bullshit. I wanted to just throat punch her to restore the quiet. I knew how much Mike had come to despise her for writing that horrible letter to him telling him he was going to "take the guilt of not having a good relationship with his mother before she died, to his grave". That was the last straw for Mike. And you all probably know him, you know.... it takes a lot for him to write people off.... he wrote her off. And here she is. Steve walked to the other side of Mike's bed looking at me after most everyone had went outside to smoke. I pleaded with him with my eyes more than words, asking him to take her out of the room. I had tears streaking my face looking at him just saying "please" and he only said that he couldn't. So I blocked them all out. I blocked out everything except Mike. I could tell by the monitor that his heart was almost done. I heard the nurse ask the respiratory therapist about shutting down his ventilator. I heard the respiratory therapist say that she can't until the physician pronounces him dead. I heard the nurse then tell the rest of them that the doctor would be in to talk to them soon. Barb, in her perpetual state of cluelessness took it upon herself to repeat what the nurse had said to them, to me. Again... the urge to throat punch was almost too much to ignore. But I refocused myself on Mike.
I know I wrote this somewhere but I don't know if it was in these blogs. Mike's fear of dying alone was a big one with living in the nursing home. We had a morbid sense of humor about things sometimes. I told him that I promise I will hold your hand until your last breathe. He grinned and said "you missed that one". We laughed and I tried again "I will hold your hand until your heart no longer beats". So standing there for the hour blocking them out and replaying that promise in my mind..... I laughed. How inappropriate is that?? It was just so absurd.... the circumstances surrounding him as I kept my promise...... I know he was already gone long before his heart stopped so I was picturing him having a bird's eye view on the whole scene. He would have laughed with me.
Mary "little old lady Mary" had called and asked if I would take her to the cemetery for his one year death anniversary. Of course, I am glad to be spending time with her and remembering Mike together this way. But I am becoming more and more certain that he really is around me all the time. Part of me wanted to think that way because there is a huge amount of comfort in that thought. The logic side of me says of course you want to think that way... there is a huge amount of comfort in your theory. I've finally managed to silence the "logic" side of me. He is still with me. He will always be with me. Going to the cemetery just isn't what I need to do anymore, but I'll be there with Mary in about 9 hours.
Sunday, August 7, 2016
Mike's 30th reunion from Newark Catholic
I had the pleasure of meeting more of Mike's friends this weekend. Mike had a friend from his Newark days who has been very kind to me even when Mike was still alive. Funny story.... I had posted (begged) on Facebook for anyone to come help me with Mike, nothing too difficult just holding him while he was on his side so that I could safely change his bed linens and give him a bath. I had added that if they didn't want to see him naked, then they probably wouldn't want to volunteer. Mike's friend sends me this message saying "there was a time when I would have LOVED to see Mike naked"..... she made me laugh. I walked into Mike's room and read it to him and he just did his normal innocent grin.
Back to present time.... this friend of his saw the pictures I had posted on Facebook from my trip to The Hill School to Mike's 30th reunion and mentioned that I should come to his 30th from Newark Catholic too, so I asked the guy putting it together and he kindly added me at no charge.
When I arrived, I kind of just stood outside the building for a good long time... I wasn't going to know anyone there. No one. I'm not shy and I do go most places alone, but this was different. I was walking into a room of people who knew my Mike from when he was young. I figured that they probably knew his family well, maybe even still kept in contact with them, and knowing that his family didn't like me I was apprehensive about meeting any bad feelings towards me. Luckily, that wasn't the case. They may have had a notion of not liking me but they didn't act that way towards me.
I stood off to the side by myself for awhile just watching people. They had set up a table and had some pictures of Mike and a lit candle. The flood of emotion that hit me for Mike's reunion at Hill wasn't present this time. I smiled when I saw the display, but I didn't feel the need to cry. The first person to talk to me was this friendly woman who was there as a spouse. I didn't quite know how to introduce myself.... I'm with Mike Vollmer... but he died. I'm Ann Francis, Mike Vollmer's girlfriend..... I'm a spouse too... kind of....
I don't even remember what I came up with. When she knew my connection to the event she excitedly told her husband. Thank goodness I had someone who knew I was coming and had a story to tell me right away about how he knew Mike. It was an athletic one... of course. LOL Soon I had a lot of people coming up to me saying "Hi Ann, I'm ________". Since I am used to being by myself it was weird for people I haven't met before to know my name. I think I may have even said a couple times "how do you know who I am?".
The friend who had mentioned the reunion to me showed up a little later and she greeted me with the most wonderful hug. Even though I didn't know her either..... I kind of had some connection.
I had to limit the alcohol since I would be driving another hour back home that night, but everyone else kept drinking which made the evening even more interesting. LOL
I heard of some of the things that happened at their house in Newark.... the mustang, the bronco, the parties, the pool, the senior party, the barn..... and the gerbil..... The gerbil... that had to be the funniest story I ever heard of Mike. I may not remember it correctly but it was something like this........ Mike was always a messy big guy who always had a shirt half tucked in, ink stains on the pocket... that kind of thing. The desks they used were the kind with the stool connected to a table that lifted to store your books. His friend said she saw the desk always moving around and the lid to the desk always kind of jumping. She figured that this was Mike's doing because he was such a big guy he didn't fit too comfortably in this arrangement. He was getting in trouble for chewing pens and pencils... I guess he never seemed to have a functioning writing utensil. One of the teachers was reprimanding him for chewing on a pen and that's when it was discovered that Mike had been keeping a GERBIL in his desk.....a GERBIL..... wth?? I about choked on my beer when she told me this story. And I could picture it. The look that he gave me all the time when he didn't feel the need to explain himself further was the same one I pictured him giving this teacher.
It was really nice hearing stories about his home life and how many people have such wonderful memories with his whole family.
In a way I feel sometimes like I'm still in a relationship with Mike, but I'm living it backwards now. Today I have cried some just thinking about how I wish I would have been able to experience all these positive interaction WITH him. Today more than most, I want more. More time with him. I want a do-over so I could add what I know of him now to how I loved him.
Back to present time.... this friend of his saw the pictures I had posted on Facebook from my trip to The Hill School to Mike's 30th reunion and mentioned that I should come to his 30th from Newark Catholic too, so I asked the guy putting it together and he kindly added me at no charge.
When I arrived, I kind of just stood outside the building for a good long time... I wasn't going to know anyone there. No one. I'm not shy and I do go most places alone, but this was different. I was walking into a room of people who knew my Mike from when he was young. I figured that they probably knew his family well, maybe even still kept in contact with them, and knowing that his family didn't like me I was apprehensive about meeting any bad feelings towards me. Luckily, that wasn't the case. They may have had a notion of not liking me but they didn't act that way towards me.
I stood off to the side by myself for awhile just watching people. They had set up a table and had some pictures of Mike and a lit candle. The flood of emotion that hit me for Mike's reunion at Hill wasn't present this time. I smiled when I saw the display, but I didn't feel the need to cry. The first person to talk to me was this friendly woman who was there as a spouse. I didn't quite know how to introduce myself.... I'm with Mike Vollmer... but he died. I'm Ann Francis, Mike Vollmer's girlfriend..... I'm a spouse too... kind of....
I don't even remember what I came up with. When she knew my connection to the event she excitedly told her husband. Thank goodness I had someone who knew I was coming and had a story to tell me right away about how he knew Mike. It was an athletic one... of course. LOL Soon I had a lot of people coming up to me saying "Hi Ann, I'm ________". Since I am used to being by myself it was weird for people I haven't met before to know my name. I think I may have even said a couple times "how do you know who I am?".
The friend who had mentioned the reunion to me showed up a little later and she greeted me with the most wonderful hug. Even though I didn't know her either..... I kind of had some connection.
I had to limit the alcohol since I would be driving another hour back home that night, but everyone else kept drinking which made the evening even more interesting. LOL
I heard of some of the things that happened at their house in Newark.... the mustang, the bronco, the parties, the pool, the senior party, the barn..... and the gerbil..... The gerbil... that had to be the funniest story I ever heard of Mike. I may not remember it correctly but it was something like this........ Mike was always a messy big guy who always had a shirt half tucked in, ink stains on the pocket... that kind of thing. The desks they used were the kind with the stool connected to a table that lifted to store your books. His friend said she saw the desk always moving around and the lid to the desk always kind of jumping. She figured that this was Mike's doing because he was such a big guy he didn't fit too comfortably in this arrangement. He was getting in trouble for chewing pens and pencils... I guess he never seemed to have a functioning writing utensil. One of the teachers was reprimanding him for chewing on a pen and that's when it was discovered that Mike had been keeping a GERBIL in his desk.....a GERBIL..... wth?? I about choked on my beer when she told me this story. And I could picture it. The look that he gave me all the time when he didn't feel the need to explain himself further was the same one I pictured him giving this teacher.
It was really nice hearing stories about his home life and how many people have such wonderful memories with his whole family.
In a way I feel sometimes like I'm still in a relationship with Mike, but I'm living it backwards now. Today I have cried some just thinking about how I wish I would have been able to experience all these positive interaction WITH him. Today more than most, I want more. More time with him. I want a do-over so I could add what I know of him now to how I loved him.
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